“My patient today is a seventy-six-year-old man who was admitted to our unit a few hours ago. He needed a breathing machine to keep him alive. I proceeded with the family meeting the way I had been trained to do. I maintained eye contact but not too much, and gave the family an update of the position.”
“I’d been taught at medical school that in a case such as this, I should speak for half the allotted time and let the family talk for the rest; venting, questioning, grieving and hoping, in no particular order. The meeting was dominated by periods of silence when all that could be heard was the dull, low-pitched drone of the breathing machine in the background.”
“The daughter broke the silence and asked the one question I had dreaded.” ‘Doctor, give it to me straight. If this were your father, what would you do?’
“Now patient-doctor interaction varies widely across cultures and continents, yet this question is a universal constant. As a medical student, I had heard it often and even after hours of preparation it left me feeling vulnerable and violated. From the daughter’s perspective, this question would help her make sense of the confusion, desolation and utter sense of powerlessness that so often defines this type of hospital experience. What she needed was expert opinion. This mother and daughter were confronted with difficult choices like whether they should go ahead with a particular high-risk procedure or wait for time to kick in. Overwhelmed and confused, it made sense that they deferred the choice to someone who appeared to know what he was doing.”
“In this case, the father was suffering from Alzheimer’s disease and the daughter said; ‘I won’t let my mother take Dad home if he is going to be a vegetable. So, the issue was, to disconnect her father from the breathing machine or not. So when she said; ‘Doctor, if this were your father, what would you do?’ By invoking my father, she probably hoped to humanize me and have a sensible conversation. My reply was. ‘Tell me more about your father.’ I knew that the daughter’s response would give her and her mother the chance to think about their loved one, about what they valued and what they considered a good life – what they thought was worth fighting for. They shared stories about the man I had only met a few hours previously, unconscious and intubated. They spoke about how he loved his independence, would hate for people to try too hard to help him and take away his independence. He loved walking and being out of doors. He would not have wanted to live in a hospice or nursing home.”
“Then it was time for me to tell them that based on a combination of my patient’s vital signs and laboratory values, as well as his Alzheimer’s, I could not hope for any progress.”
“The mother and daughter exchanged glances, their shoulders tense, their eyes, teary. The room seemed to be filled with memories of a man who had lived and loved well. They turned to me and asked me to make him comfortable before turning off the breathing machine. As they walked out of the room, they had their arms about one another.”
That was more or less the way my husband’s life came to an end. He had collapsed in the park while on his morning walk. In spite of Alzheimer’s he still played bridge and walked daily, using a route that he knew intimately. Yes, not everyone with Alzheimer’s sits in a chair staring blankly ahead. My husband was one of those people who managed to do quite a lot in spite of his terrible illness.